"Jess would talk about how she felt dumb. She just couldn't keep up," says Toronto mom Kate Hebdon of her now 11-year-old daughter Jess*.
Jess always seemed like a bit of a daydreamer. Even in junior kindergarten, the distracted four-year-old would stare out the window instead of listening to instructions.
"Eventually it became clear she couldn't attend like other children, and she began to fall behind," says Hebdon.
A psychiatric assessment revealed a two-pronged diagnosis — ADHD with a learning disability.
"The psychiatrist has to tell you all the possibilities for treatment, and one that is helpful for many children is medication," says Hebon. "There's a self-confidence that comes with being able to function at the same level as other kids, and the psychiatrist felt it was possible that medication would help her," says Hebdon.
She was told her struggling daughter's academic potential was high, but Jess's output was so minimal, it was hard to even give her a grade. Hebdon compares decision to treat Jess's ADHD with medication to giving a child with diabetes insulin or a kid with vision problems glasses.
"We did a huge amount of research on the different medications and their potential side effects, and looked at what can happen when ADHD is left untreated, and then weighed the pros and cons," says Hebdon. "The idea that any parent would put their child on medication like this without knowing the side effects is outrageous."
But are parents able to access all the necessary information about side effects?
Alarmist cries about medication side effects
A recent article in the Toronto Star brought to light new and troubling findings on a variety side effects experienced by some Canadian children taking ADHD medications.
The paper's investigation uncovered 600 cases of serious side effects in the past decade, including 11 deaths — seven of those suicides. The paper also said that a growing number of medical professionals and parents are reporting adverse reactions to ADHD medications, but that Health Canada, which collects adverse reaction reports, does not adequately make them public, allowing the prescription drug industry to "largely police itself."
"Everything in the Star article has been well-known for many years," says Heidi Bernhardt, the national director of the Centre for ADHD Awareness.
Bernhardt says that while the information in the article is important, she is concerned that the report will frighten parents of children with ADHD who might benefit from medication. She says the dramatic side effects highlighted by the Star — hallucinations, mania, cardiac events, suicidal idealization and suicide — have all been documented and are very rare.
"This isn't something that's hidden or been difficult to find," says Bernhardt. "It shouldn't be a huge surprise."
She also notes that the report contains no mention of the number of children in Canada taking ADHD medication without serious side effects, because that specific data does not exist. As such, there is no context in which to place the statistics the Star has unearthed.
"Physicians never want to prescribe medications that are risky, and some doctors we work with have been practicing for 10 to 20 years," says Bernhardt. "If this medication was truly scary, physicians would not be prescribing it."
What is mentioned in the Star report is that as many as one in 20 children have ADHD. If even a fraction of these children are medicated, there are likely tens of thousands of Canadian children taking the medication.
Risks of not medicating
The risks of not medicating a child with ADHD is a topic that Toronto mom Diane Westell knows all too well.
On a recent play date, her 10-year-old-daughter Rachel jumped into the laundry chute on the third floor of a friend's house and fell all the way to the basement.
"She was okay, but she could have broken her back," says Westell, whose daughter had not taken her medication on that particular day. "That's the effect of having ADHD."
Beyond the risky impulsive behaviour, children with ADHD who are left undiagnosed and untreated often don't complete school, don't go on to higher education, and may turn to self-medication which can lead to substance abuse. They also suffer from above average rates anxiety and depression.
Westell remembers what her daughter was like before she started taking Concerta, a well-known ADHD medication.
"She was having so much trouble at school, even though she showed good intelligence," says Westell. "She would throw her pencil and say things like 'I wish I was dead.'"
Westell says she and her husband were aware of the "rare serious side effects" of ADHD medication, but were more concerned about how the drugs could change her personality.
"We love Rachel, and Rachel's ADHD is a part of who she is," says Westell. "But we came to the decision we should at least try it, because we were quite worried about the serious problems ADHD might cause down the road."
Concerta has helped Rachel bring her grades from a C plus to a B plus average, and school is less stressful, but the pills are not a magic bullet. She's tried other medications over the past three years when Concerta has not been effective, including Strattera, which can cause mood swings and hysterical outbursts. Now she's back on the Concerta, which sometimes suppresses her appetite during the daytime.
"It helps, but it's not a cure," says Westell. "Parents who aren't dealing with ADHD think we're just giving our kid a pill to make them quieter, but it's so not that simple. It's a complex disorder even with the medication."
Hebdon's daughter also tried several drugs to find the best fit, and experienced a range of side effects.
"The downside of these drugs is that they don't sleep well and they don't eat until later at night," says Hebdon.
Jess's mood swings on Concerta and Adderall were dramatic, so she now takes Biphentin in the day time and Strattera at night. The Biphuntin helps her concentrate and the Strattera has reduced her anxiety to help her sleep better.
"I have no doubt that her liver and kidneys are affected. But you have to see a real advantage during the day to deal with these side effects," says Hebdon. "I wouldn't want her taking any medicine she doesn't absolutely need."
Reports of side effects not adequately handled
For Hebdon, the Star article was troubling for a different reason than Bernhardt, because it points to a systemic problem regarding flaws in how reports of medication side effects are being handled.
The article highlights the fact that reports of adverse side effects are forwarded to the drug companies themselves, and the drug companies are in turn required to send these reports to Health Canada. But Health Canada is not responsible for analyzing the reports or acting on them — that duty is left to the drug companies. The Star also points out that federal drug safety law do not require doctors to report serious side effects.
"There needs to be higher regulations beyond the drug company themselves, and the side effects need to be gathered and tracked," says Hebdon.
Berhardt agrees. "Do we need good reporting on side effects? Of course. But we also need public education about ADHD. There's an underlaying tone that sometimes implies ADHD is not a real condition, and therefore does not need to be medicated, but I've never met a parent that wants to put their child on medication."
*Some names have been changed.